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Monday, October 31, 2016

Well, it's October 31st. The 31st day of Down Syndrome Awareness month. For the last five years, I have chosen to honor it by posting here every day. But this year, I didn't want to do that.

Partly, it's because my gradually dwindling posts on this blog have been intentional. I want to honor Cora's privacy and not share too much of her here. And equally responsible is the fact that I've been feeling that what I do have to share feels muddy and mixed up and is sometimes hard for me to sort out.

Of course, I can always share about how wonderful Cora is. And she is. Of course she is. She is beautiful, radiant, and delightful. She is so loved, and for such good reason.

She is in full-swing in her kindergarten class these days. She is learning alongside all her peers. Learning to write, learning letters and letter sounds, and sight words. She has developed impressive skills with scissors, and has already cut her bangs twice in the last few months. Just yesterday, she drew her first recognizable drawing. She has so many friends, and we get to see kids greet her with delight whenever she appears. One of her friends regularly announces his intent to marry her. Another of her classmates has told me that Cora is her best friend.

She impresses us every day. Because she is a wonderful kid. She is a wonderful kid who has Down syndrome. It affects most things about her, from how she processes the world, to how she learns and communicates. It is a part of her that is inextricable from who she is. So I can share how wonderful my little girl with Down syndrome is and hope that that counts as my part of awareness, but lately that just doesn't feel meaningful enough.

The things that have felt meaningful to me lately are things that I've been reluctant to share. Because they're not all sweet, rosy, feel-good sentiments. They are complicated and stressful and concerning.

They're not specifically about Cora, but about the world we live in.

So I struggle with what to focus on. I can choose to focus on the things for which I am grateful; the things that make us so lucky. We are so lucky that Cora is in a wonderful classroom, with a fabulous teacher, a teacher's assistant and an amazing paraprofessional. We are so lucky that she is in a school and district that wants to include her in a regular general education classroom. We are so lucky that she has a dedicated and loving special education teacher to help her and oversee her schooling.

We are so lucky that our family lives in a community with diverse and incredible resources for families supporting people with disabilities. We are so lucky that I had the opportunity to participate in a year-long training program to prepare our family to support Cora in her preparation for and entrance to kindergarten. We are so fortunate that I had the time to spend learning, seeking out resources, and preparing to advocate for Cora's education.

We are so lucky that our community loves and supports Cora.

We are so lucky.

But so many people aren't. Many don't have easy access to support resources, or the time to pursue those resources. Many of my own friends are in battles with school districts over their children's access to a fair education. Many are long, intensive, exhausting legal battles that drain them of time, money, and energy.

My family is so fortunate. But the fact that I feel that way is so disheartening. It is so sad to me that our positive experience is considered so special when compared to that of so many others. It is so frustrating that it is necessary to spend countless hours preparing to advocate for my child.

So much of it is so frustrating to me. So when I choose not to share many of my thoughts, it's largely because I am so full of concerns and disappointments and don't know how to convey them without seeming to be consumed by the doom-and-gloom. That doesn't feel very helpful.

It's a tricky place to be, and one that takes up so much of my energy of late. There is the part of me that perseverates on the problems, and the part of me that just wants to celebrate and support my wonderful child.

My simplest truth is that this girl deserves so much. She deserves to be the valued, beloved child that she is. She deserves to be seen for who she is, and to participate just like everyone else. She deserves the supports that she needs to help her be successful. She deserves a great community, and a school that supports and appreciates her.

She deserves it all. And it's our job to help her access it. It's our job to educate and advocate and give her opportunities, choices and experiences. I just wish that we lived it a world where it didn't need to be such hard work.

We have celebrated a myriad of big and small accomplishments that have each seemed to be momentous, many of them because she worked so very hard to get there. Like learning to ride a tricycle, jumping with both feet off the ground, getting to be a great climber, starting to speak in small sentences, making lots of friends, and giving herself a haircut with my crafting scissors.

And now we are celebrating a step that through it all seemed to loom and intimidate, that seemed so daunting and exciting and terrifying: starting kindergarten.

Cora started kindergarten last week.

She took it in a stride, walking proudly and confidently into the classroom, saying hello to everyone in sight and offering luminous smiles and high-fives. She hung up her sweater and backpack, took her seat and yelled, "Bye Mama! Bye Ruby! Bye Daddy!" as she settled in and didn't look back. She took that school by storm.

Already everyone seems to know who she is. The adults at school all greet her when she walks past. When we're out on walks, kids from doorsteps shout out hellos as we go past. While tired, she seems to be transitioning so smoothly. She is overjoyed to go to school each day.

It's me that has been nervous and anxious and alternately terrified. It's me that spent hours, days, weeks, months and even years preparing to be her advocate and to support her in an inclusive placement in our neighborhood school. It's me that felt like there was no way I could be enough; that the struggle would be too much. It's me that followed the stories of so many friends that have come before, many who also fought to have their children included in school, and many who didn't win the fight. I've watched as so many kids went to segregated classrooms designed only for children with disabilities or significant needs.

The number of children with disabilities who actually get to go to school in general education classrooms with the rest of their same-age peers is painfully low in most states in the U.S. The laws may support educating children in the least-restrictive environments, but it is not always what districts are willing to accommodate. It is one of the many ways that people with disabilities continue to be marginalized today.

So as we walked into school with our amazing little five-year-old daughter with Down syndrome and greeted her new school, we were all very proud. Proud of our daughter, our family and of all that we've learned. We are lucky to be in a school district that welcomes her. And we are proud to be starting this journey we've prepared for for so long.

And I am learning to set aside my anxiousness and protectiveness and am learning to trust her to go forward into the world. It is hard and it is bittersweet. But I am so, so proud.

Wednesday, June 1, 2016

This simple fact has been causing my breath to catch in my chest for the past several days. This little girl, this piece of my heart, has somehow gotten to this moment, and it feels sudden and shocking and bittersweet.

I was so terrified when she began school. She was so tiny.

She didn't speak. She was starting at a community cooperative preschool that expected kids to be able to use the bathroom independently, serve and clean up after themselves and negotiate a new, exciting and scary world. She would be going outside to an enormous playground with adults watching from the sidelines, when all summer I had been one step behind, spotting her all the way.

She had only started walking a few months before. She hadn't begun to potty train. She could sign fairly proficiently, yet nobody at her new school knew sign language. Her new teacher had no experience with children with intellectual disabilities. There were so many worries to add to my list.

Yet look how far she has come.

Today, when I dropped her off at school, a crowd of four boys started yelling from the playground and running toward us, yelling "Cora's here!" As the kids walked in a line, hopping into the building, I witnessed a small skirmish between two young boys. One of them bitterly responded that the other boy wasn't his friend, to which the other child said, "Yeah, well I love Cora." "No, I love Cora!" came the counter-attack.

After Cora gave me a final hug goodbye, I walked away, trying not to let the other parents see me holding back my tears.

So yes this week feels awfully bittersweet.

Don't get me wrong. We are so excited for next year. We are thrilled that Cora will be going to her neighborhood school alongside peers of all abilities in the general education classroom. We are delighted that the kindergarten teacher that attended her IEP meeting specifically requested that Cora be in her classroom, and called me on my phone a couple weeks ago to tell me that she was excited that Cora would get to be in her classroom and also in her Early Kindergarten Transition program for a few weeks this summer. We are excited and terrified. And we are so so hopeful. For we know that this is one more step in Cora's process of learning to navigate this world on her own two feet. Yes, she will have a lot of help. Help from us, from her teachers and therapists, from her friends and family.

But it is she that is leading this path.

It is she that is sharing her soul and her joy, and her marvelous and uncanny ability to get and give so much love. She is the one who shines, who surprises people and who makes connections wherever she goes. It is her path. And we are here to follow her and support her as she goes.

As the school year has been winding up, I've found myself getting frustrated with the work involved and eager to leave this phase behind. But now I am seeing what we are leaving and looking at it through new and sentimental eyes. And I'm thankful for these moments, when I'm given the chance to have this clarity to appreciate just how important an experience this has been. Cora has community. Cora has friends. Cora has adults and children who care about her and want to see her do well and be happy.Cora has made a mark, as we always knew she would.

And so we will leave this phase behind, acknowledging the marks she's leaving behind her and looking forward to the many yet to come.

Sunday, April 10, 2016

These two little girls, who have always adored one another, have recently started playing together all the time. We can usually expect bursts of 15-20 minutes of giggles and running around before Cora gets her feelings hurt and someone needs to intervene.

But in the past week, they have amped up their play time exponentially. We're talking hours of racing around, chasing one another, making up sweet little games of "Follow me!" "Now you do it!" "My turn," all set to the tune of the most infectious giggles.

For Cora, who has almost always wanted near-constant interaction, most of which had to come from me, this is a big deal. And for Ruby, it is priceless too.

It's making me start to think about how things will go next fall, when Cora goes off to full-day kindergarten. I've been so wrapped up in preparing for her upcoming IEP meeting and working to secure the ideal supports, services and placement that I often forget how very strange it will be to send her sweet little self off five days a week for several hours. I forget how much we will miss her. For me, it will be a big transition, one that I am sure will be accompanied by a lot of tears, but for Ruby it will come as a big shock. Her companion, her sweet silly sister.... her best friend will be gone a lot.

I guess the silver lining is that I will finally get some of the one-on-one time that I so appreciated with Cora and haven't gotten much chance to have with Ruby. But oh, we will miss this big sister girl.

We have a few more months of this precious time. Time to watch these two grow and change, and get ever closer.

Wednesday, April 6, 2016

5 years ago today she went through something unbelievable just to get the chance at this life. 5 years ago today I trusted the nurses, doctors and surgeon enough to hand off my tiny baby for her heart to be stopped and made whole.

It may have been the hardest thing I've ever had to do, but my daughter seemed to take it in a stride. She was no longer sickly and gray, struggling to breathe, and unable to eat. She could grow, she could nurse, she could thrive.

And look at her now.

Today I celebrate this amazing little person. This girl who has grown so much, and who has been the reason I've grown so much too.

We pulled out the book that shows the story of her first year. We flip through the pictures and tell her how when she was a baby she was very sick and needed an operation to fix her heart. She pores over the pictures, saying "Poor baby Cora. So sick.' She touches the photos that show the wound on her chest and feels sorry for her baby self. "So hurt," she croons. Then she tells me "All better," and turns a few more pages to see her baby self smiling and laughing, getting cuter by the minute. "Baby Cora's so cute..." she says. We look at the scar on her chest, a white line that stretches the length of her sternum. We talk about how strong and brave she is, and how wonderful that her doctors helped fix her heart.

It makes me happy to hear her tell the story of her heart repair with her short little sentences. I get tingly with pride when she shows me her scar and tells me how her body can heal. It makes me smile through a few tears seeing just how far she has come.

I was happy to have the opportunity to contribute a small part to the section on open heart surgery, and have been excited to review it here on Our Cora Bean.

I began reading my free copy of the book in January, just before my sweet girl's fifth birthday. Most of the time the events and feelings surrounding Cora's birth and first few months of life feel like they're in the distant past and are so far removed from my current reality. So I was honestly surprised to find myself drawn so viscerally back to my initial feelings and memories from those early days. We learned of Cora's Down syndrome diagnosis after she was born, and I spent my days during her NICU stay stationed by her isolette, poring over books like Babies with Down Syndrome. Without the convenience of a smart-phone or access to the internet, and with very little real knowledge about Down syndrome, that information felt like my lifeline. I loved the information, the photographs, the parent accounts and the descriptions of what to expect during early childhood. But it still felt like information was missing, and I found myself having so many more questions.Now, as I watched my almost-kindergarten-aged daughter race around the house giggling with her sister, I was again reading a comprehensive book on Down syndrome designed for new parents, but this time I found myself not only wiping away tears, but nodding my head in agreement, and being heartily impressed by the resources and varied perspectives that the book offers.

The book starts with explanations and definitions, works through the diagnosis (both prenatal and post- birth), gives input on finding support, processing and sharing the news, and then moves into common experiences over the course of your child's life. It covers medical care, surgeries and hospital stays, feeding, and many other challenges of those early months, as well as insight on day-to-day life. As the book progresses, it discusses your child's education, therapies, and the journey from infancy to adulthood. It touches, at least briefly, on a comprehensive range of concerns and experiences and seeks to give the reader a big picture, while offering details and resources for more information at the end of each well thought-out section.

Throughout, personal accounts from parents, siblings and people with Down syndrome pepper the pages, (including some of people I know online and in real life!) giving insight into the evolving and varied points-of-view of the families, and offering the immensely valuable perspective of individuals with Down syndrome. So often it is the families of people with intellectual disabilities who speak for them, so including a range of voices of those with disabilities is invaluable, allowing us to see the people the book speaks of as real, whole, valuable individuals, and also helping to offer a glimpse of future possibilities to parents concerned for their children's futures.

Overall I was impressed with the range of information covered and the large number of voices included. But out of all the great things included in The Parent's Guide to Down Syndrome, my favorite may be the oft-repeated reminder that each of our children are unique, and that their experiences will be their own. When your child is a baby, especially a baby with a diagnosis that brings with it stigma and so many unknowns, it is natural to seek out the one right answer, the one right experience, the one example that will show you a picture of your child's life, and your family's lives by proxy. But this book wisely points out that there are no right answers or right experiences, that the path of each of our children and each of our families will vary widely, and that that is part of the beauty. If each parent reading this book were able to truly take that to heart early on, I'm sure it would help alleviate much concern and worry.For me, as I fret about the upcoming IEP process that will determine so much of my daughter's future for the next dozen years, it is a poignant reminder to read Jen Jacob's words, "Life is, of course about the journey for our children, but also so much about our often-parallel journey alongside them." I appreciate the opportunity to recognize and respect my daughter as the unique and amazing person that she is, while still recognizing the important role that we, her family, play as we support her along her way.Interested in getting your own copy of this book?

You can enter the Grand Prize giveaway, including an "I love someone with Down syndrome" tote, an advocate coffee mug, a variety of books including The Parent's Guide to Down Syndrome, a t-shirt, stickers and more (over $150 value) enter here: a Rafflecopter giveaway

Tuesday, January 12, 2016

I'm sitting here, kids asleep, a slight buzzing of excitement coursing through my stomach and chest every few seconds. Tomorrow is Cora's fifth birthday. Five.Years. Old. How did this happen? How did my tiny baby turn into this lovely little girl? It's happened before my eyes, all the moments stretching into all the long days, the seasons and years soaring by.